Once I thought I would show this site to people I know but, honestly? Before I took a month or so to think about what I wanted from my blog… I wasn’t proud of it in the slightest.
I want to write about my life- not in a monotonous, ‘who-would-care-about-that!?’ way, but at the same time I refuse to select only the highs, good moments and positive revelations. My goal is to be honest. Real. To be another voice to all of you suffering with illnesses like mine out there saying ‘you are not alone’ even when you cancel, when the friends you love so much seem to forget you exist. I promise you are never alone (okay so that sounds a bit creepy but you know what I mean.). And anyone healthy? Or anyone who knows me, who has looked this up for a laugh? I hope by now that I, or anyone you know who is sick, has been honest with you. I hope they’ve tried to explain how hard they try to see you, how much they miss you and would give anything for a few hours with you, a card or even an unexpected message. But if they haven’t then I’m here. I’m here to share with you what it’s like to spend every day being ‘careful’ not to ‘over do it’ and every night not knowing how long sleep will take, when you’ll wake up or even how you will feel when you do.
I’m here to ask of you one simple thing: understand.
Someone who is healthy can never truly know how this life feels. A carer knows, they can almost feel it too but there is still that barrier. Illnesses like ME affect every sufferer differently so even I might not understand what someone else, in a seemingly identical situation might be going through. What matters is that you try. Merely accepting that the person you know is telling the truth -that they are ill- is often enough. ‘We all get tired’ or ‘You need to improve your fitness’ are tolerable (but still definitely not a good idea) to begin with because, like I said, you don’t understand. And we know it. However simple words and phrases like ‘lazy’ and ‘try harder’ can be so so hurtful. Just because you don’t fully understand someone’s situation or illness that does not make it fake OR psychological. Let us explain so you can understand a little more (and trust me- if you come out with any of the statements above as a response to an explanation? You will not be very popular). Be curious, narrow the explanation down by asking questions. I for one feel like a right idiot even imagining myself walking (or wheeling) up to people I know and saying ‘Hey, guys, you know how I’m never here? Well…’ *launches in to 10cms of personal hospital records* (see you in nine years…). It’s awkward. ‘What’s up?’ Or ‘Where have you been?’ Usually require two word answers, not a giant lecture. How can we be sure you want to hear what we’ve got to say?
If you want to look these things up on the net to get even more information, or so you look like you know what you’re talking about when you next see your ill friend (little sneaky if you ask me, but we’ll let it slide) then start with sites like ‘ http://www.thegracecharityforme.org/what.asp ‘ (a site I only discovered recently but seems really informative and goes through things step by step) or ‘ http://www.meassociation.org.uk/about/what-is-mecfs/ ‘ that give symptom lists to get you on your way with basic facts and some of the science. I say ‘start with’ because they definitely don’t give you the whole picture as far as how it feels- what it’s like to actually live with it. I’ll put in a few blog links in a moment because real people’s stories and experiences definitely help to balance out the cold, hard facts, but there are so many sites to choose from.
A few examples…
Even typing #spoonie (that word is another story…) #chronicillness #invisibleillness or anything along those lines in to the search bar on Instagram and similar sites can bring up a whole host of accounts belonging to people like me who are sharing their lives with a chronic illness. Want to ask a reasonable question? Why not comment or send someone a message asking for advice? Most people will be really keen to grab any opportunity to #raiseawareness (that’s another one you could try).
Like I said; you’ll never fully understand but you can still be supportive- or not even that. Just, for once, people please please be a little less judgemental. We’ve got enough to cope with as it is.